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Decision-making by ambulance clinicians in London when managing patients with epilepsy: a qualitative study
  1. Lisa Burrell1,
  2. Adam Noble2,
  3. Leone Ridsdale2
  1. 1Faculty of Health and Social Care, Kingston University and St George's University of London, London, UK
  2. 2Institute of Psychiatry, King’s College London, London, UK
  1. Correspondence to Lisa Burrell (formerly Hollings), Kingston and St George's University of London, Cranmer Terrace, London SW17 0RE, UK; lisa.hollings{at}lond-amb.nhs.uk

Abstract

Background In the UK, epilepsy is the neurological condition with the highest rate of accident and emergency department re-attendance, with most arriving by ambulance. Ambulance clinicians triage patients and assess their need for attendance. This study examined the decision-making process of ambulance clinicians in these situations.

Methods In-depth interviews with 15 ambulance clinicians working in South London.

Results Interviewees identified that epileptic seizures that self-resolve present a triage challenge. They reported insufficient training and guidance available for these situations and substantial reliance on experience to direct their practice. Fears of litigation in the event of complications, pressures of public expectation and limited on-scene access to relevant patient information or appropriate alternative care pathways were reported to be significant factors influencing decisions for care for epilepsy seizures.

Discussion Ambulance clinicians reported negotiating a balance between patient safety and patient choice, when deciding whether to transport a patient with epilepsy to hospital or not. Clinician fears and the pressures and limitations of practice may result in hospital conveyance being used as a safety precaution in some instances.

Conclusions Decisions regarding conveyance of patients with epilepsy in this study were substantially guided by ambulance clinician experience rather than by robust training and guidelines. This study supports the need for improved guidance that addresses this common area of practice and the development of alternative care pathways that may be used by ambulance clinicians for patients with epilepsy.

  • Seizure
  • epilepsy
  • ambulance
  • triage
  • epilepsy
  • emergency ambulance systems
  • neurology
  • paramedics
  • clinical management
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Introduction

Epilepsy is one of the most common chronic disabling neurological conditions in the developed world affecting between 260 000 and 416 000 people in England and Wales.1 The prevalence of active epilepsy in the UK is 1%.2 Of these, 13–18% of patients will attend an accident and emergency (A&E) department each year3–5; 2% on more than four occasions. The majority of patients arrive by ambulance and most (∼75%) already have an established diagnosis, rather than presenting with new-onset epilepsy.6–8 Of neurological conditions, epilepsy is associated with the highest rate of emergency re-admissions within the same year.9 The frequency of A&E attendances in the UK and subsequent admissions put high demands on resources in the National Health Service. In 2008/2009, there were 37 140 National Health Service hospital admissions with epilepsy as the primary diagnosis.10 The average episode cost was £1514,11 indicating a total inpatient cost of £56.2 million.

Ambulance clinicians in the UK are not obliged to transport to hospital all those persons whom they attend.12–14 There is pressure on ambulance clinicians to assess and triage patients to appropriate care pathways and promote care within the community.14 ,15 This extends to epilepsy. Current UK ambulance clinician guidelines state that when persons who have had an epileptic seizure are ‘fully recovered and not at risk, and in the care of a responsible adult, consideration may be given to not transferring patients routinely to hospital unless they wish to travel.’16

A recent audit revealed that the London Ambulance Service (LAS) attends approximately 40 patients per day where the presenting complaint is documented as epileptic seizure but that in 19% of cases the decision is made not to convey to hospital.17 This audit analysed paperwork completed by ambulance clinicians of 200 patients with reported epileptic seizures. Of these, 21 (11%) were deemed to require urgent hospital treatment with emergency transfer and 37 (19%) were not transported to hospital. The most commonly reported reasons for not transporting patients to hospital were ‘declined aid against advice’ (n=17, 46% of those not conveyed) and ‘assisted but not conveyed’ (n=9, 24% of those not conveyed). More research is required to allow quantitative comparison of conveyance rates between different ambulance trusts for patients presenting with epileptic seizures and to know whether these figures are representative of wider practice.

Given the pivotal role ambulance clinicians have in facilitating or avoiding A&E attendance, this qualitative study focuses on the decision-making of ambulance clinicians when attending to persons with epilepsy and explores their perceptions of which factors influence their decisions. Specifically, we asked:

  1. How confident are ambulance clinicians in managing persons with epilepsy?

  2. What factors influence their decisions on how to care for these persons and whether to transport them to A&E or not?

Methods

A qualitative study was conducted in South London between June and August 2010. Permission to conduct the study was granted by the LAS Clinical Audit and Research Department and local management teams. The convenience sample was recruited with the aid of staff notice board advertisement. The area from which the ambulance clinicians were recruited is an area with the highest rate of emergency admissions related to epilepsy18 and one of the highest rates of poorly controlled epilepsy.19 At the time of the study there were five skill levels of ambulance clinicians in London (see table 1). To capture as much diversity in opinion as possible, we recruited across all levels.

Table 1

Skill level competencies of ambulance clinicians in London

Face-to-face, topic-guided interviews were conducted in informants' homes or work place. The guide was initially created based on a literature review and developed following pilot interviews with ambulance clinicians and feedback from the epilepsy user group Epilepsy Action.

To facilitate conversation, interviewees were first asked to recall a case where they felt they had made ‘good’ decisions, and a time where they were less than ideal. The clinicians were asked to reflect on why they viewed these decisions to be such and were probed upon the issues of confidence, use of guidelines, relevance of external pressures, and perceived risks and benefits and alternatives to transportation to an A&E.

Interviews were tape-recorded with consent and transcribed verbatim. The data were analysed using a computerised qualitative data analysis package (NVivo). Codes were generated through open coding and categorised thematically; relationships between themes were then identified through constant comparison of the transcripts, codes and categories. The codes and their applications were reviewed along with the suggested alternative interpretations until consensus was reached about the interpretation that best fit the data. Quotations are used where either they represent a general opinion or highlight areas where attitudes conflicted. All presented quotations have been anonymised.

Results

Sample

Fifteen emergency ambulance clinicians were recruited and interviewed individually. All clinicians were currently employed on frontline ambulances. The sample consisted of one emergency medical technician level 2 (EMT2), four emergency medical technicians level 3 (EMT 3), five paramedics, four paramedic team leaders and one emergency care practitioner. Age ranged from 23 to 46 years. Participant baseline information is provided in table 2.

Table 2

Participant baseline information

Themes emerging from the interviews are presented below.

Confidence in managing patients with epilepsy

One-third of the ambulance clinicians interviewed (participants 3, 4, 6, 10 and 11) reported low levels of confidence when managing patients with seizures. This group of participants included four clinicians trained by the ambulance trust and one clinician trained in the higher education institute. Length of experience within the group varied from 1 to 15 years. All those who described themselves as confident in this area of practice attributed this to their length of experience, not their training. Those with less confidence reported feeling inexperienced and finding seizures disturbing to witness.

When asked to describe cases where they felt they had managed a person with epilepsy well, clinicians typically described emergency states, such as status epilepticus. In these circumstances, clinicians felt able to carry out interventions in accordance with the training they had received and for which guidelines were available. The observable benefit to the patient—such as termination of a seizure—was also important in making clinicians view these circumstances as successful.

Clinicians perceived other situations, such as when the person had already finished seizing spontaneously or complex partial seizures, as more challenging. One-third of participants (participants 4, 6, 7, 10 and 14) viewed their training as inadequate to prepare them for such situations. Four of these participants were trained through ambulance trusts. One was trained through a higher education institute. These cases were reported by clinicians to lead to anxiety and feelings of vulnerability over decision-making.

Deciding whether to transport patients to A&E

While two-thirds of clinicians stated that they felt confident to manage patients with epilepsy, only just over half (participants 1, 4, 5, 7, 9, 12, 13 and 15) reported that they felt confident enough to assess these patients' need for transportation to A&E. Five of those reporting confidence in this area were trained through ambulance trusts and three were trained through higher education institutes. Clinicians who were least confident to make this decision were mostly guided by feelings that they were not able to assess the patient adequately to ensure safe on scene discharge: ‘I always feel safer taking them to hospital’ (participant 3).

Other reasons given for lack of confidence were previous negative experiences and the perceived unpredictability of epilepsy: ‘I don't feel personally that I can be 100% sure that they're not going to have another fit… I don't mind sitting there for an hour or so just trying to convince them to go to hospital’ (participant 8).

By contrast, clinicians who reported confidence in deciding not to transport a patient to hospital after a seizure were often guided by the views of the patient. Forty per cent of participants felt patients with epilepsy generally understood their condition well and were competent to make an appropriate decision once recovered. ‘If the person themselves is quite sensible then why are we putting our opinion on them? You know, why are we trying to force them to do something?’(participant 5)

One ambulance clinician described that when safe to do so, leaving a patient in the community was her preference: ‘The majority of the time I think they are happy to stay at home. I personally think that that is the best thing’ (participant 13).

Access to patient history

The primary factor recognised by clinicians as determining whether they would take a patient to A&E post-seizure was the patient history. Lack of access to information about previous seizure presentations and other patient-specific past medical history was recognised as a significant challenge when attempting safe triage. In this context, some clinicians viewed transportation as the ‘easy option’ (participant 4).

Fears of litigation

In discussing whether to transport a patient with epilepsy to A&E, one-third of participants (participants 3, 6, 8, 10 and 11) expressed anxiety over being liable for the patient's welfare. Only one-third of participants (participants 1, 5, 7, 9 and 14) felt that they assured adequate organisational support in the clinical decisions they make for patients with epilepsy. This was associated with a general feeling that many patients would be conveyed to A&E unnecessarily purely as a safety-net to avert liability. ‘What happens if they go on to have another fit and that one ends up being a bad one? Then will they come back to us and say why didn’t you take this patient to hospital?’(participant 5)

Expectation

Over two-thirds of participants (participants 1, 4, 6, 7, 8, 9, 10, 11, 13, 14 and 15) recognised greater pressure when called to a patient in a public place. The primary reason given for this was bystander expectations, particularly the expectation for drug administration.

One-third of participants (participants 1, 3, 6, 7 and 10) felt limited in what they could do for patients experiencing seizures and this lead to feelings of helplessness. Three of these were EMTs who felt that not being permitted to administer diazepam limited their ability to help the patient. Two paramedic team leaders also reported feeling limited or helpless in situations where they were unable to arrest the seizure such as when diazepam seemed to be ineffective: ‘[I felt like] a bit of a spare part in terms of what I could actually do’ (participant 6). ‘It’s just that feeling of helplessness’ (participant 10). ‘If they're still fitting, there comes a point where you feel a bit helpless. You think okay, there's nothing more I can do for them really’ (participant 1).

Because of these views, four clinicians said that they would like to see diazepam administration allowed by EMTs in the future and a further four said that they would like a wider drug choice available to paramedic level clinicians for seizure management.

Alternative care pathways

All participants expressed a view that there was no available facility other than A&E that would provide both a safe environment for recovery and facilitate further investigation and treatment if required. Eleven participants (participants 1, 2, 3, 5, 6, 7, 10, 11, 12, 13 and 15) said they may be inclined to contact a general practitioner instead of taking the patient to A&E in some circumstances, and one-third of participants (participants 7, 8, 10, 13 and 14) said they would consider leaving the patient in the care of a responsible adult.

Discussion

Ambulance clinician training is traditionally focused around management of emergency states,20 ,21 with an emphasis on drug administration.16 ,17 Patients with epilepsy, who do not require emergency intervention, were therefore found to pose a particular challenge to ambulance clinicians taking decisions for their care. On the one hand, the risks of repeated seizures or unrecognised complications are both detrimental to the patient and threaten the reputations and future careers of clinicians through medico-legal action. On the other, ambulance clinicians aim to provide the most appropriate care and avoid unnecessary A&E admissions that may be frustrating for the patient and a burden on hospital resources.

Concerns over litigation and a perceived lack of organisational support in this area have been previously identified.13 Mechem et al (2001) studied the outcome over a 72 h period for patients who refused hospital transport after a seizure. Ninety-four per cent of those followed up had no further seizure activity within this period. There were also no reported deaths or serious complications.22 This suggests that the risk may actually be much lower than that perceived. Development of current clinician guidelines to support this complex area of practice may enhance confidence in terms of legal responsibility. In box 1, we offer a summary of suggestions from the current available literature on circumstances when transportation of a person with epilepsy to A&E is necessary.

Box 1

Suggested guidelines for hospital transportation23,24

  • No known epilepsy diagnosis.

  • Prolonged seizure duration (>5 min).

  • Slow (>30 min) or incomplete recovery of mental status.

  • Recent increased seizure frequency.

  • Repeat seizure within a 24 h period or previous history of a repeat seizure.

  • Unusual precipitating factor, such as alcohol, hypoglycaemia or non-compliance with anti-epileptic drugs.

  • Fever.

  • Injury requiring hospital treatment.

  • Pregnancy.

Clinicians in this study reported that it was their prior experience, rather than training, that was most influential in determining their level of confidence in managing patients with epilepsy. Most reported their formal training did not provide sufficient guidance on how to manage the full range of presentations by persons with epilepsy to which they attend. The apparent gap in training and guidelines in this area and associated lack of confidence reported among staff may go some way to explain why the most frequently documented reason for non-transportation to hospital in the previously mentioned LAS audit17 was refusal by the patient against clinician advice.

The opinions expressed in this study also suggest that improved on-scene access to patient-specific medical history and the development of alternative care pathways would prove beneficial for patients where continued care is deemed necessary but emergency intervention is not. This may be in the form of seizure diaries carried by the patient or a tailored facility to allow direct communication with the patient's epilepsy nurse specialist. Such alternatives could avoid unnecessary lifestyle disruption for patients and relieve some of the burden on hospital emergency resources.

Conclusions

Our results indicate that patients with epilepsy can be taken to A&E not because of a clear clinical need but because the attending ambulance clinicians often do not feel sufficiently confident or informed to be able to adequately assess the patients' medical needs. This is compounded by a perceived lack of alternatives to A&E for necessary continued care. Further research is required to establish whether these results represent wider UK ambulance practice.

In 2001, the Department of Health identified the need for more in-depth training for ambulance clinicians and improved clinical practice guidelines.21 Our findings indicate that epilepsy is one area where there may still be considerable scope for improvement in relation to practice.

Strengths and limitations

The sample of ambulance clinicians interviewed included staff with a wide variety of skill levels and years of experience. These are factors expected to influence practice. Therefore, the degree of variety in baseline variables achieved in the sample studied allows a greater breadth of insight for interpretation. However, recruitment by convenience sample may have led to bias in the opinions reported.

Interviews were conducted by the author LB. It was recognised that clinicians might therefore be more reluctant to discuss areas of their practice, which lay outside recognised normal protocols. However, as has been observed by Snooks et al previously,13 it was felt clinicians actually talked more openly about their opinions due to the interaction with an interviewer who was also perceived as a colleague with shared experiences.

It is recognised that the views expressed only describe practice among clinicians in one area of London. The importance of experience suggests that learning from colleagues has a significant impact on practice leading to reinforced opinions among clinicians who work together. Therefore, there may be variation in the practice of clinicians in other areas. Further research is required to establish whether the opinions expressed are reflective of the wider population of practicing ambulance clinicians in the UK or limited to a minority.

We also have no available data about whether any clinical support service was accessed by the clinicians in the instances described above. The relevance of this, again, would benefit further research.

What is already known on this subject

  • Previous studies have addressed the impact of epilepsy attendances on accident and emergency resources and identified the mode of arrival in a majority of cases to be by ambulance.

  • The factors that influence ambulance clinicians in making decisions to transport patients to accident and emergency in non-emergency circumstances have not been previously explored.

What this study adds

  • Our results suggest the primary factors affecting transportation decisions are a perceived lack of on-scene access to necessary information or appropriate alternative care pathways, a mismatch between clinician training and the expectations of practice and clinician's fears of litigation.

Acknowledgments

The authors wish to thank the London Ambulance Service Clinical Audit and Research Department for their advice and assistance; John Doyle, Sector Training Officer for the London Ambulance Service and Simon Harding, local Acting Operations Manager, for their support. The authors are also very grateful to the user group Epilepsy Action for their topical guidance in constructing the study. Sincere thanks also to all the ambulance clinicians who participated in the study for their time and enthusiasm in taking part in this research.

References

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Footnotes

  • Funding The study was supported by a National Institute for Health Research Service Delivery and Organisation (NIHR SDO) grant (08/1815/234). The funders had no role in the design or conduct of this review, or in the preparation, review, or approval of the manuscript. All authors carried out this research independently of funding bodies. This study was completed by LB in part requirement for an MSc in Clinical Neuroscience at King's College London.

  • Competing interests The authors declare: (1) no financial support for the submitted work from National Institute for Health Research Service Delivery and Organisation Programme; (2) no financial relationships with commercial entities that might have an interest in the submitted work; (3) no spouses, partners or children with relationships with commercial entities that might have an interest in the submitted work; and (4) no non-financial interests that may be relevant to the submitted work.

  • Ethics approval The National Research Ethics Service considered this study did not require ethical approval. Approval granted by the London Ambulance Service Clinical Audit and Research Department reference number LAS/SE/2010/05. Permission was obtained from the London Ambulance Service Clinical Audit and Research group for research to be conducted and submitted for publication (ref number LAS/SE/2010/05). Informed consent was obtained from individual participants.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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